Last month I had Kent in the ER (emergency room) two times, a day apart. On the 2nd visit, when his elevated heart rate returned even though he was on the new beta-blocker, the ER kept him longer. After repeated doses of medication which were unsuccessful at getting his heart rate under control, they decided to admit him to the cardiology floor.
It’s hard for any of us to stay focused and on top of the details when we don’t feel well. Add Myotonic Dystrophy (DM) to the equation and it is especially hard for my sick family members to be attentive to their needs. Therefore, at home there is a lot of responsibility on me when my family members are sick. When their situation progresses to the point that they need outside help, once I get them to the ER or hospital, I find a little relief because other people now have eyes on them too.
While in the ER, I try to be vigilant and make sure that those that are looking over my loved one are aware of the vulnerabilities of DM. When we get to the ER it is a long drawn out process with a lot of waiting. When it involved Kent’s heart this last time, they took him immediately back which took care of some of the waiting. They had unsuccessfully tried Adenisone the day before and knew that it wasn’t SVT but Atrial Flutter that was affecting Kent’s heart.
Over the next several hours they used different medications to try to get Kent’s heart rate under control. Finally it seemed that his heart rate was normal but they now needed to wait and make sure that his heart rate stayed that way. They admitted Kent to the cardiology floor. That turned out to be an illusion because they didn’t have any rooms available on the cardiology floor to move Kent to. Kent was moved into an overflow area of the E.R. and technically he was a patient of the cardiology floor but he wasn’t easily accessible by the cardiology team. Plus, the cardiology team that was observing Kent weren’t aware of all of his other co-morbidities and complications from DM.
It was about 10 o’clock at night, we were both drowsy and Kent’s heart seemed to be working correctly. I started to notice that Kent started gurgling a little. This was because he was drowsy and didn’t have his Trilogy (bi-pap) on him.
The gurgling brought me up stark and I remembered a year ago when Kent ended up on life-support. It was a similar scenario with Kent being in an in-between status between the ER and the floor that they were going to admit him to.
A year ago Kent was sick with a virus. It turned out to be RSV. Kent was sick and at home I was paying attention to preventative virus treatments, his oxygen levels, etc. In the middle of the night he fell out of bed and couldn’t get his balance. It was very difficult to get him up. I drove him to the ER instead of calling an ambulance because I didn’t want him going to the local hospital that the ambulance would take him to. Once at the ER they assessed him and determined that they were going to admit Kent to Huntsman (the cancer center connected to the University of Utah ER). We were both exhausted and started falling asleep. I was less experienced at that point and assumed that Kent was getting the attention that he needed. I could tell that he was gurgling and I tried to draw attention to it but no one seemed concerned. They did put an oxygen cannula on him but then they went away. Since he was now the responsibility of Huntsman, the ER didn’t seem to pay much attention to him.
Kent was probably in this difficult place of gurgling and sleeping for 1 – 2 hours. I was concerned and tried to get attention but again I was inexperienced and assumed that they knew what they were doing. By the time Kent was moved to Huntsman they had to call a code on him. I am not sure what Kent’s status was when they called the code but it was very scary. He was somewhat coherent but I am assuming they called the code because his oxygen saturations were dangerously low and they couldn’t get them where they needed to be. In hind-sight, if I had been more demanding and dramatic while waiting in the ER, maybe he would have gotten the attention that he needed sooner. It turned out that they had to intubate Kent and for 4 days he was on life support. Just writing about this and reliving the experience is pretty traumatic.
This time I was more experienced and realized that we were again in an in-between place between the ER and an assignment of a floor in the hospital. Because of the intubation experience last year, we always have Kent sit up at an angle when he is in a hospital bed. I called in the nurses and said that he needed respiratory help. They started watching him close while I went out to the car and got his Trilogy (bi-pap) which I have learned to pack with us whenever I take Kent to the hospital. We got his Trilogy set up on him and the hospital assigned a respiratory therapist to come assess Kent.
Wow, we made it through this time without intubation. We weren’t out of the woods yet because Kent’s heart eventually went back to the 178 pulse and they needed to do a cardioversion on him. They had tried multiple medications that didn’t work and now they needed to shock him which required anesthesia. As you know, anesthesia can be very dangerous for those with DM.
With the help of the anesthesia papers on myotonic.org Kent was anesthetized carefully. His high heart rate was taken care of with being shocked, thankfully. He was released from the hospital and sent home. The process of helping his system rid of the anesthesia was long but he is currently stable.